How do you really explain what it’s like to live with and parent a kid with autism? As you know, if you read my blogs and if you have a kid with autism in your life, it is not easy to explain. I often get questions like ,”does he understand ….?”, “is he high functioning(whatever that means)?” “how does he express himself?” So I decided rather than try to describe what it’s like I thought giving every day examples might be more illustrative. Of course Bryan is one kid with autism and his presents itself in its own unique way. One thing that I have always found interesting are the growth spurts. Not height but functioning. It never seems that one thing happens, but rather a cluster of good behavior, a cluster of good language, or a cluster of independence.
Here goes with the examples, I divided them into categories to keep my train of thought more organized:
Language-When we were getting ready to go to Disney, I talked to Bryan about the rules for the trip. He does well when he knows the rules and I guess managing expectations really works well for everyone. I told him there are 3 rules: 1. No hurting Jason or me, 2. No screaming-side note-Bryan’s most favorite thing to scream is “I love you”. That poses a huge challenge-do you want to say please stop telling me I love you? No but at a lower decibel would certainly be appreciated. Ok and finally, and most importantly to manage anxiety, 3. You do not have to go on any rides you don’t want to. The last one, while conceptually easy for him, from a language standpoint was very tricky. You see, I ask him to tell me the rules, the first two are very easy for him to repeat back. The third one presents all sorts of pitfalls. He has to get the order of things correct and the pronouns, etc. It usually ended up as “If I don’t have to go if I don’t want to on a ride” or some sort of jumbled up version. Hmmm, what am I an amateur here? This needs simplification. The replacement I gave him was “I can choose my rides” or “I don’t have to go on any rides.” Much better, much easier and less stressful for him when I pose the question. It’s more important he understands the concepts, but I do like to know he can articulate them too.
Also with language there are triumphs, while on the outside looking in may appear so small, so insignificant, yet are so huge when language deficits are present. Last night Bryan said he wanted to take a bath. I said “ok, are you going in my bath?” He said, “no I like my bath better than yours”. OMG I had never heard such a thing before. He made a true comparison and used the right language to do so. I almost called his speech therapist but then more kept coming out. He was putting away his laundry and he found some underwear in the pile that belonged to Jason. He took the underwear and went into Jason’s room and said, “Hi Jason, these underwear are yours, not mine, put them away Jason” (ok he’s a little bossy, where does that come from?) Another great use of language. So small, yet so great. I was in our laundry room and folding more laundry and just peeked around the corner to catch Jason’s eye. He gave me that twinkly knowing glance; the one that let’s me know he loves Bryan too and gets it.
Today I was driving with Bryan home from seeing my mom. I was really tired today and a little irritable. Bryan had been sort of bugging me with lots or repeating language and he knew he was making things worse. It’s tough because the more upset I am or annoyed the more anxious he gets which leads to more frustration for both of us. So we left my mom’s place and we were driving home. Bryan said ” I feel overwhelmed”. NEVER have I heard anything like that. I asked why he was overwhelmed and he said because you’re upset with me. So I thought to myself that I was never so happy to be annoying him if annoying him revealed such a great use of language. However, I did feel like crap that I was stressing him out. We drove a little further and then he said “what is autism?” At this point, I looked at him and said “why are you asking this Bryan? What do you think it is?” He said “I think it’s when I laugh too much.” Not really a wrong answer. Bryan is known for seriously inappropriate laughter. If Jason is mad or I’m angry he starts to giggle. And then starts to really laugh. Sometimes it’s good and makes us laugh too sometimes it’s maddening. I then explained a lot of stuff to him about what I thought autism is, but truly his definition was pretty damn close.
Independence-On any typical day, Bryan will unload the dishwasher. When they are home with me we have to run it practically every day. When they are at camp for 6 or 7 weeks I think I ran it twice! However, the level of effort Bryan puts in is amazing. Last night he loaded dishes from the sink into the dishwasher and went to put the soap in. He brought the almost empty container and said, ” we have no more dishwasher soap.” I told him we did and that it was in a green container and he proceeded to put the soap in and then take the old container out to recycling. He then emptied our kitchen garbage, replaced it with a new bag and took out the rest of the recycling. All of this was done properly, and without my asking. He then made his lunch and yelled at Jason to take his lunchbox out of his backpack and for Jason to clean the litter pan. I had already asked Jason to do this about 3x. It’s almost hilarious, but it is so truly joyful to watch him do these tasks so freely, effortlessly and with great pride. love.
Behavior-I think this may be the hardest category to show examples of that will resonate. If you can imagine that your kid truly cannot be quiet and that will drive you insane, even though you know language is so important. It used to be I could ask Bryan to be quiet for a few minutes and he would last about 3, then about 5, then about 7. We are up to about 10. I bet you are thinking this is nuts, but it really is just the nature of the situation. To live with someone who is constantly talking and talking about stuff from 3 years ago or stuff that is so out there, you can get frustrated. He will tell you things like “I said something mean to grandpa 4 years ago” out of nowhere. Or so and so is old or so and so was mad at me on Sept 28. The good is the control we are now seeing to be quiet when needed and to reel it in.
Just a bunch of examples to let you peek through our window!